Teenager with BWS: Hello, my son was diagnosed... - BWS Support

Hello, my son was diagnosed(presumptively with BWS at around 6 months of age) There was no test available at the time. His blood was banked and ultimately came back positive. He is now 16 years old and has had elevated blood pressure for a couple months. He is very fit, and athletic. Today he had a survey renal ultrasound and his kidneys are enlarged which I am assuming is from the BWS. I am wondering if there is any connection between BWS and hypertension? I have been reading(maybe too much) about fibromuscular dysplasia. I would appreciate any thoughts. He has also been diagnosed with tourettes but not sure there is any relationship there.

Hello...I am not aware of any known link between BWS and hypertension. Although there is obviously a link between renovascular disease and hypertension, and of course BWS children do have an increased risk of renal problems, including engaged kidneys, renal cysts and medullary sponge kidneys. I am not aware of any link with FMD either.

And I am not aware of any link with Tourette's either I'm afraid. It could be that these additional problems are unconnected. My son is 16 and has BWS but also has another syndrome and epilepsy, both unconnected to his BWS.

Our support group has a meeting with BWS experts at Great Ormond Street Hospital in October. I am happy to pass on your questions if you would like me to.

Interested in this post. My 16 year old BWS son is headed for back surgery and next week to a genetics workshop. We're trying to find a reason for tummy and dizziness problems as well as his back issues.

Update. Just heard back from genetic doctor. They found calcification in his kidneys at our renal ultrasound on Wednesday. Now, we're rushing to get in to see a nephrologist before we head to Chicago for our first consultation with the back surgeon. I guess this means he has msk. Scary part is that our local tribal clinic had insisted on vitamin d (we all have low levels here in Alaska) and calcium. Genetic doctor said stop taking immediately add it can be detrimental for BWS patients because of the sponge kidney thing. So, now I'm interested in talking to anyone in the group whose adolescent has mkp.

Vetsjs1, last night I found and read this really thorough report on BWS. There are several mentions about heart and cardio and I thought it might help you. It even lists this group as a resource. ncbi.nlm.nih.gov/books/NBK1...